June 23, 2023
Helen Craig shares findings and insights from her and her team’s explorations into how research ethics works in relation to co-production, public involvement and engagement.
In recent months a group of us, with a little funding from Co-Production Collective, have been exploring research ethics processes in universities – and ethical behaviour.
We spoke to over 50 people from a variety of backgrounds including co-producers, public contributors, researchers and those working in the field of ethics from outside of universities. The project team was made up of public contributors, UCL researchers and UCL staff members involved in public engagement and co-production.
As a result of this work, we have developed a guidance document which is available as a PDF and Word Document to share our findings and advice and a project report which is available as a PDF and Word Document that covers what we found in more depth. Our key takeaways were:
We suggest some next steps on each of these areas at the end of the report. But here we wanted to take some time as a team to reflect on why we worked on this project, what we found and where we could go next.
Helen Craig - Public Engagement Manager at UCL. Member of Co-Production Collective
“I wanted to be involved in this project because it seemed like people within and beyond UCL were unclear on the ethical dimensions of their work with partners outside of academia. This included when ethical approval was needed and what constituted ethical behaviour when carrying out Public Engagement, Patient Public Involvement and Engagement or co-production.
Especially in my role as someone who supports researchers to do projects in this area, I felt like I couldn’t give them the definite answers they needed.
Somewhat naively, I thought this was just a problem of time, and understanding. Surely the answers were our there! However, as we started talking to people it became clear that this was an area with no easy answers – there’s uncertainty and grey areas throughout. One early interview remarked that looking into this topic was like “opening Pandora’s box!”
Still, I’m proud that we have developed the guidance we have, and that the project report stands as an accurate summation of the issues raised with us. I hope they spark future work!
It’s also been an absolute pleasure working as a team. Lynn, Jade and Emeline have inspired and driven me, sharing their experiences and leading major changes in how the project was done, who we spoke with, and on the resources produced. The work has moved from an internal focus to one that’s more reflective and open to all. If I did this project again, I would only wish to include more in the team, especially representatives from the world of ethics committees, funding and publishing.”
Jade Davies - Research Assistant at Institution of Education, UCL’s Faculty of Education and Society
“As somebody at the very start of my career, I wanted to be involved with this project to better understand how to make sure my future work with public contributors is as ethical, sensitive, and meaningful as it can be. I have been really lucky to have the guidance of wonderful colleagues, who have been paving the way for true co-production and meaningful engagement. But I know this isn’t common. In my conversations with other researchers, I learned that lots of people are confused about what the terms co-production, patient and public involvement (PPI), and public engagement mean, and how they can meaningfully and ethically engage in these practices.
In the end, we found there is a lot of diversity in different institutions’ approaches to when are searcher needs to apply for ethical approval to work with public contributors. Indeed, there were even differences within the same institution, where smaller ‘local’ ethics committees have different guidance and expectations. Beyond these technicalities, however, it became clear that our broader approach to ethics needs a re-think. Some people seem to see ethics as a “tick-box” exercise and speed through applications in a bid to gain prompt“ ethical clearance”. But being ethical is much more complex than any one application would ever be able to capture. Instead, we should strive to be ethical thinkers, thinking beyond standard considerations such as informed consent and confidentiality and understanding that ethical considerations are nuanced: different for each population, each team of researchers, and each individual research project. While formal ethical review is not the necessary path for some forms of engagement, an ethical thinker will acknowledge the room for ethical considerations, even in these situations. I am looking forward to taking these principles forward in my future work to make sure I am meaningfully and respectfully collaborating with public contributors and hope the work we have done will help other researchers on their journey to engaging ethically with the public.“
Lynn Laidlaw - Patient and public contributor, co producer and peer researcher. Member of Co-Production Collective.
“I wanted to be involved with this project for multiple reasons including a long standing association with the Health Research Authority (HRA) as part of their public involvement network and a real interest in the whole concept of ethical research and behaviour. I thought I understood “pure“ research ethics and many of the wider ethical issues surrounding research. On reflection I understood the issues through the lens of MY perspective and experience, including feeling that research ethics are often “done” to public contributors, not with them. I was surprised, but yet not surprised, when the public contributors I spoke to told me that they hadn’t really been involved in the ethics approval process, unless there were specific issues to be overcome that it was perceived they could assist with. Also, the people I spoke to concentrated on the wider ethical issues that were important to them, including equality, diversity and inclusion and ensuring that coproduction was authentic, not faux production. What I don’t know is, was this due to a lack of understanding of “pure” research ethics or that they just found the wider ethical issues in research more relevant to them. I feel it raises an interesting question about research ethics in general, has the context changed? Are we at a stage where research ethics should be looking at the wider ethical issues in research rather than concentrating on research participation as codified by the declaration of Helsinki? If so, in what way does the process of seeking ethical approval need to change, including membership of Research Ethics Committees and structures to enable this? What are the wider ethical issues that need to be considered? How do we facilitate this conversation and who should be involved in it? Who gets a say about the issues research ethics should engage with?
As always, I have more questions than answers, including how do I reconcile the natural desire of researchers to have a space to discuss ethical issues and have a committee structure to do so, with the "othering" discomfort that this produces in me as a public contributor to, and participant in research? I feel that this overlaps with what I perceive as the hierarchical structure of academia. Will this culture prevail despite increasing strategies and frameworks promoting co-production and involvement? Perhaps all we can hope to do is highlight some of the issues and potentially start a conversation and debate which includes all the actors, including external ones such as journals. It feels very important to move beyond “getting” ethics as a tick box process, to thinking ethically, both with regard to research participation and the wider ethical issues in patient and public involvement and engagement (PPIE)/ co production. How can this be achieved in an inclusive way that involves everyone in the process? “
Emeline Han - PhD student at Institute of Education, UCL’s Faculty of Education and Society
“In my own experience as a PhD student at the IOE (UCL’s Faculty of Education and Society), going through ethics review for participatory research has been a helpful and flexible process facilitating thoughtful and thorough consideration of ethical issues. However, as I spoke to various stakeholders within and beyond UCL during this ethics project, I realised that this was not necessarily the case for other researchers or public contributors. For example, several researchers encountered reviewers who did not appreciate the evolving nature of participatory research, or deemed public contributors ‘too vulnerable’ to work with. In the same vein, some public contributors felt ethics review was a paternalistic process being done ‘to’ them rather than ‘with’ them as equal partners. Ethics committees also struggled to make consistent decisions on whether researchers’ work with public contributors required formal ethics approval, given the ‘grey areas’ between public involvement activities and research activities.
Collectively, these conversations prompted me to reflect on three main problems. Firstly, they pointed to a lack of clarity on the boundaries between participating in research and being involved in, engaging with, or co-producing research. Secondly, they revealed a lack of consensus between stakeholders on what should be the remit of research ethics review. Thirdly, they raised the question of whether traditional research ethics review is compatible with participatory research, especially if this process does not include public contributors. Unfortunately, what people told us suggested that current institutional ethics processes may reinforce the power asymmetries between academic researchers and public contributors that participatory research seeks to challenge. Participatory research calls for shared spaces that foster open and ongoing discussions about ethics between researchers and public contributors, rather than top-down and one-off decisions on what is ethical.
While our project has not found easy answers to all the above problems, I hope that the resources we have developed will encourage and equip researchers to engage ethically and meaningfully with their public contributors, with or without formal ethics review. I also hope that our resources, which feature a range of voices and experiences, provide a starting point for exchange of different perspectives that will lead to wider and deeper systemic changes in the future. “
If you would like to find out more, we have developed a guidance document which is available as a PDF and Word Document to share our findings and advice and a project report which is available as a PDF and Word Document that covers what we found in more depth
Interested in finding out more or exploring how we could work together?
Co-Produce with us